A FAMILY has told of their determination to help find a cure for the life-limiting condition which is threatening their son.
Neil, 40, and Jayne Malcolmson, 41, were devastated when they were first told their youngest son Luke had Duchenne muscular dystrophy.
It is a currently incurable disorder which affects around one in 3,600 boys. It causes muscle degeneration and eventual death.
But ever since Luke was diagnosed at just 18 months old, they have dedicated much of their life to raising funds to find a cure.
It’s not a forlorn hope either. Luke could be suitable for gene therapy trials which will start in the next year, said Jayne, who is also mum to Matthew, 8, and Samuel, 5.
And now, in her continuing campaign, she is planning a huge fundraising night in the Borough Hall in Hartlepool. It will be held on November 15 with dance crew Ruff Diamond heading the bill.
Today, Jayne spoke to the Mail to explain her dogged determination to help her son.
“I follow genetics closely and I am due to go to a conference to find out what is going on with the research,” said Jayne, a dispensing assistant at Pagan and McQuade opticians.
She told how Luke was first diagnosed with the condition.
“When he was 18 months, he had a problem with diet and he wasn’t putting weight on.”
Luke was taken to the University Hospital of North Tees where a consultant paediatrician was “extra vigilant and noticed his mobility was not as good as it should be.”
Tests showed Luke, who is a pupil at Sacred Heart Primary School in Hartlepool, had the condition.
“Luke knows himself that he can not run like the other kids, he struggles up the stairs and can’t do the things other children do,” said Jayne. The mum, from the Elwick Road area of Hartlepool, is planning the charity night to raise money for a group called Action Duchenne.
The charity which was set up 12 years ago and funds innovative research into a cure and effective medicines for Duchenne Muscular Dystrophy.
Other highlights on the night will include an acoustic band, a tombola, auction and a raffle.
Ruff Diamond street crew member Ryan Wilson said: “We are delighted that one of our first performances in town after Got To Dance will be to help such a good cause.”
WHAT IS DUCHENNE MUSCULAR DYSTROPHY.
Duchenne Muscular Dystrophy is a severe and progressive muscle wasting disease.
Young boys will face much of their life confined to a wheelchair and without treatment will die in their late teens early twenties.
But there is hope. Researchers over the last 20 years have made exciting progress by identifying the gene that causes DMD and are working towards possible therapies. .
New gene therapy approaches are being trialled in labs in the UK that might in the future be able to fix or replace the faulty gene and so bring about a treatment or cure for this disease.
Drugs such as steroids and other treatments can be used to help to delay the symptoms of the disease but so far no real therapy has been found to halt the long term muscle damage.
HOW CAN YOU SUPPORT LUKE.
The fundraising night at the Borough Hall is raising money for a support group called Duchenne Action.
Tickets are £5 available from Jayne on 07765 375110, or from Cope’s Studio hair and beauty salon in Raby Road.
Action Duchenne can be contacted on 0208 556 9955 or by emailing firstname.lastname@example.org